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Is There Any Point Doing A Blood Test 5 Days After Bad Gluten Reaction Then gluten-free?

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I have had unexplained symptoms for years that I can now trace back to gluten intolerance or celiac (fatigue, muscle/joint pain, mild hypoglycemia, low blood pressure) and recently more serious symptoms (IBS/lactose intolerance, severe hypoglycemia, anxiety, food allergies, dizziness, weakness, mood changes, tingling in arms, hands and toes). I delivered baby #4 Oct/08 - I suspect that may have triggered/worsened things. Since the hypoglycemia got really bad I've been experimenting with my diet - especially carbs - whole grains only in small quantities, tried Atkins for a bit, then only non-wheat grains since wheat affects blood sugar quickly. I've been keeping a food journal for about 6 weeks. Anyway, long story short, although I've been avoiding wheat, I've been eating oatmeal once in a while, rye once a few weeks ago and barley this past Thursday. Oatmeal has made me feel REALLY strange (woozey in the head, can't think, have to lean on something or I'll fall, exhausted, etc) but I never put it together with gluten since I always ate it with other things, and I'm seemingly allergic to other foods too. Looking back in my food journal I see that the one time I ate rye, I felt extremely awful within half an hour and almost fell asleep sitting up in the middle of the day. BUT when I had barley Thursday, it was horrifying! I felt like I might die, plus my right arm went completely numb and tingly, as well as both hands. My abdominal pain caused me to double over, all my muscles hurt so bad. I ate it around 3pm and that whole night my leg pain was almost unbearable. I woke up Friday morning with puffy eyes, I could barely get out of bed, felt so weak all day, was even more cranky than lately with my kids all morning, reacted with allergy symptoms to everything I ate all morning and had more mild ab pain, especially after eating.

After eating the barley, I remembered reading that barley, rye and oats were similar to wheat and looked it up. GLUTEN!!!! Lightbulb moment! Then as I read more and more and looked up celiac and my other symptoms, I couldn't believe it!! B12 deficiency explains the few that celiac didn't, and increased intestinal permeability from celiac damage explains the recent food allergies. I know some people here are bummed to figure out that gluten is not their friend, but I was super-excited!! Over the past couple of months things have gotten really scary, and more than once I've questioned my mental health, and to have an explanation this simple was such a relief!

Friday morning I called and made a Dr appt - I see him Tuesday afternoon. Here are my questions. First, the easy one. Do you have to be fasting for the blood test or can I go and get it done right after the appt? Second, should I force myself to eat some gluten between now and then? How long does it take for the antibodies from such a huge reaction to disappear from my bloodstream? Should I maybe eat some oatmeal which I react mildly to - I never want to touch barley again as long as I live!!

I know some people don't pursue a diagnosis, but there are 2 reasons it's important to me (how important is yet to be determined ). First, I have 4 little girls and if I am celiac for sure, I'd like to have them tested, or at least put then on a gluten-free diet. But in reality, it's going to be easier to keep them on a strict gluten-free diet if they have a real diagnosis, which I wouldn't want to bother trying to get unless I have one. (My kids have no health issues, but my 2nd who is almost 5 is REALLY small for her age - my 2 year old fits into her clothes - and just doesn't look as robust and healthy as my other kids.) The second reason I'd like a diagnosis is that if I have had malabsorption issues, I'd like to be tested for certain deficiencies so I can justify the expense of supplementing - even in liquid form for a while. I'm particularly concerned about calcium, B12 and iron. I've had to take iron during my last 2 pregnancies, I recently weaned my 4th after 3 years straight breastfeeding or nursing, so I suspect I'm deficient in calcium, and I've learned that magnesium can't be absorbed without adequate calcium, and magnesium def can explain my muscle pain issues. I bought some sublingual B12 yesterday, plus a liquid B Complex and it was not cheap! But I NEED to get my health and energy back to look after my family.

I've looked at the Enterolab website, and I think I could justify the expense with a positive blood test - I would HATE to do the biopsy. I don't do well with IVs and hospitals, etc. (Had my last 2 kids all natural with a midwife!) Then if we found the gene, I would have my kids tested. But if my blood test comes back negative, well, that would make the whole thing more difficult. Money is tight with 4 little ones and I stay home.

Does anyone know of any science about how long gluten-free is too long for the blood test? Or personal experiences of how much gluten you ate before and the results of your blood test?

Thanks!!

Heather

PS - I'm very happy to have found this resource! Reading old posts has certainly been enlightening, educational and comforting.

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Unfortunately the blood tests do leave some of us still undiagnosed because they do have a high rate of false negatives. If you are going to have the blood testing done you need to go back on gluten for at least a couple of months first. Although rates for false negative are higher for children than for adults I would ask your daughters pediatrician to do a blood test anyway. I wouldn't wait for myself to be diagnosed. Take a good look at your DD's growth charts, if there has been a substantial drop from where she was when she was born IMHO that is enought to warrent a screening. It is better to do this sooner rather than waiting as if her growth is being impacted by gluten intolerance at her age she should catch up.

In additon if you decide to do genetic testing keep in mind that many doctors only test for DQ2or DQ8 and there are 7 other genes that are associated with celiacs. Not all doctors realize this and not having 2 or 8 does not mean that celiac or gluten intolerance isn't an issue.

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Thank you for your reply. Well, based on this, I guess I'll have the blood test but not be surprised if the results are negative. If a false negative is even more likely for children, maybe I'll save my 5year old the trauma of a needle (yes, I said trauma :) ) and try gluten-free for her too, although that might be traumatic too. Do you normally see an improvement in children more dramatically/quickly than adults on the gluten-free diet?? How long should I keep her gluten-free before challenging? Then if we see a difference in her gluten-free we could always do the stool test for her. Even if a blood test came back positive for her, there's no way I'd subject her to a biopsy if I could possibly avoid it.

Still wondering if the blood test is done fasting or not. Could someone please tell me that?

Thanks,

Heather

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